We lost Marqus Valentine, co-founder of Sick Cells, on June 22, 2020. He was diagnosed with sickle cell anemia Hgb ss at 6 months and had a tough time managing the disease. As a child, he spent countless weeks hospitalized. He started chronic blood transfusions at a young age and resumed a childhood outside of the hospital. His parents worked tirelessly to ensure he could participate in activities despite sickle cell. Marqus never let sickle cell get in the way of his dreams of making films and graphic novels. As co-founder of Sick Cells, he was dedicated to pushing forward his mission to elevate the voices of the sickle cell community. He was determined to improve the lives of future warriors and their families. Marqus was an advocate for blood donation, a recipient of the 2019 American Red Cross Blood Service Heroes award, a mentor for younger warriors and a go-to source for advice. His purpose was to improve the lives of current and future sickle cell warriors and their families. Marqus believed all people with SCD should have the opportunity to engage in a wide range of activities. Marqus’ legacy will forever be a reminder of his triumphs, resilience, positive spirit and complete dedication to uplifting others in every way he could.   Marqus Valentine’s Obituary: Marqus Valentine, co-founder of Sick Cells, dies

Barbara Harrison is currently an Assistant Professor at Howard University and teaches graduate students, medical students, and medical residents in various specialties, in the areas of genetics, genetic testing, genetic counseling and ethics. In addition to her academic duties, she provides genetic counseling services at Howard University Hospital for a variety of referral reasons, in areas including prenatal (primary), pediatric, adult, and cancer genetics. She is the Director for Community Outreach and Education for the HU Center for Sickle Cell Disease. Online profile

Dr. Genice Nelson is a Nurse Practitioner Specialist in Farmington, Connecticut. She graduated with honors in 2003. She has more than 16 years of diverse experiences, especially in nursing. In conjunction with FENDI, and in recognition of Women’s History Month, the Sickle Cell Disease Association of America, Inc. (SCDAA) has honored Genice Nelson, APRN, as one of several women nationally who have made a significant impact in the Sickle Cell Disease community. Genice has gone above and beyond the call of duty in hopes of making a difference in the sickle cell patient community. Genice T. Nelson affiliates with John Dempsey Hospital, UConn Health. Online profile

Hertz Nazaire Hertz was born in Port-Au-Prince, Haiti on October 2, 1973 where he was raised by friends and family of his mother Yverose Nazaire who had left Haiti to find work in the United States. Nazaire was a sickle cell patient and a Haiti artist. Nazaire struggled with the pain and challenges of Sickle Cell Disease which caused his vision to fail over the years. The frustration of slowly going blind encouraged him to appreciate the process of painting with a deeper purpose. Nazaire focused on creating design and space on his website dedicated to improving the image of Haiti on the web and providing a new community through the use of a new social network platform where Haitians can share their arts and culture with the world. Nazaire also continued to work in health advocacy as a speaker for Sickle Cell Disease Pain awareness. His Sickle Cell Series continues to be a significant feature in medical books and other media publications related to the subjects of Sickle Cell Disease or Chronic Pain.   Hertz Nazaire's Obituary: Artist, 'Sickle Cell Warrior' Hertz Nazaire Dies at 48  

George Harris Carter has had personal experience with the affects of sickle cell disease (SCD), leading him to be a patient advocate for over thirty years. SCD is an inherited blood disorder where normal round shaped red blood cells change to a sickled shape, ultimately blocking the flow of blood and oxygen to body parts and tissues leading to extreme pain. Lack of oxygen flow can also damage muscles, bones and internal organs and lead to other serious medical problems. George has dedicated himself to educating the public about SCD and providing patients with support by leading the statewide Sickle Cell organization in his home state of Virginia. George Harris Carter is the administrator of Sickle Cell Association of Richmond (OSCAR). He has also been a strong advocate for drug development and clinical trials, serving as FDA Office of Special Health Issues (OSHI) Patient Representative for SCD. Online profile

Dr. M. Dawn Nelson, PhD is an Associate Professor of Audiology at Central Michigan University. She has an 18 year old daughter with Sickle Cell Disease SS. Dr. Nelson attended a Sickle Cell conference at the FDA (February 7, 2014) where many persons with Sickle Cell Disease expressed interest in research related to hearing loss. Since then, she has been contacted by the FDA. Dr. Nelson is currently directing research studying the association between dizziness/balance and hearing problems and Sickle Cell Disease. Online profile

Dr. Wun graduated from the Albany Medical College in 1984. He works in Sacramento, CA and 1 other location and specializes in Hematology/Oncology. Dr. Wun is affiliated with UC Davis Medical Center. Ted Wun's clinical interests are malignant and non-malignant hematology and he maintains an active clinical practice. His primary areas of research have been in the pathophysiology and complications of sickle cell disease (SCD) and the epidemiology of venous thromboembolism with focus on cancer-associated thrombosis. He and his colleagues demonstrated significant platelet and leukocyte activation in SCD and described platelet-erythrocyte aggregates in these patients. He has participated in several multi-center therapeutic trials in SCD and is the former Chair of the Sickle Cell Disease Advisory Committee of the National Heart, Lung, and Blood Institute.   Representative Publications: Increased incidence of VTE in sickle cell disease patients: risk factors, recurrence and impact on mortality Tapered oral dexamethasone for the acute chest syndrome of sickle cell disease Improvements in haemolysis and indicators of erythrocyte survival do not correlate with acute vaso-occlusive crises in patients with sickle cell disease: a phase III randomized, placebo-controlled, double-blind study of the Gardos channel blocker senicapoc (ICA-17043) Online profile

Dr. Chavis Patterson is a licensed Clinical Psychologist whose work focuses on stressors that put children, couples, and families at risk for future difficulties. He received his master and doctoral degrees from the American University in Washington D.C. and completed his internship at the Philadelphia Child Guidance Center. He has worked with families and their adolescents at Temple University’s Center for Research on Adolescent Drug Abuse, The Children’s Hospital of Philadelphia, Congreso de Latinos Unidos, and the NorthEast Treatment Centers. Dr. Patterson has conducted classes on parenting and has presented nationally on topics such as family and parental relationships, coping with a chronic illness, and non-medical alternatives to pain management. Currently, Dr. Patterson works at the Children’s Hospital of Philadelphia (CHOP) in the Neonatal / Infant Intensive Care Unit (N/IICU). He is responsible for oversight of the provision of expert psychosocial care to the families as they cope with the complexities associated with having a child in a N/IICU. In addition to his work at CHOP, he is a member and on the executive board of the Delaware Valley Chapter of the Association of Black Psychologists. Dr. Patterson is also on the Board of Directors for the Sickle Cell Disease Association of America, Philadelphia / Delaware Valley Chapter.   Representative Publications: Acceptability of In Utero Hematopoietic Cell Transplantation for Sickle Cell Disease Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research Lessons Learned From a Randomized Controlled Trial of a Family-Based Intervention to Promote School Functioning for School-Age Children With Sickle Cell Disease Predictors of Academic Achievement for School Age Children with Sickle Cell Disease Health-related quality of life and adaptive behaviors of adolescents with sickle cell disease: stress processing moderators Comparing abstract numerical and visual depictions of risk in survey of parental assessment of risk in sickle cell hydroxyurea treatment A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease Online profile

Coretta M. Jenerette, PhD, RN, CNE, earned a PhD and MSN in nursing from the University of South Carolina and BSN from Clemson University. She completed a certificate in nursing education at The University of North Carolina at Chapel Hill and is a certified nurse educator. She also completed post-doctoral fellowships at both Yale University and The University of North Carolina at Chapel Hill. Her program of research is aimed at enhancing self-care and family management in vulnerable populations such as individuals with sickle cell disease. Specifically, she uses both qualitative and quantitative methods to identify vulnerability factors in order to intervene by enhancing self-care and family management resources with the goal of improved health outcomes. Grants: Project Sickle CIA: Cultivating Informed Activated Adolescents with Sickle Cell Using a dyadic approach of adolescents with sickle cell disease and their mothers. This exploratory study will test a 5 week web-based intervention to improve outcomes in both the adolescent and the mother.   Representative Publications: An intervention to decrease stigma in young adults with sickle cell disease The effects of music therapy on transition outcomes in adolescents and young adults with sickle cell disease Does Attendance at a Sickle Cell Educational Conference Improve Clinician Knowledge and Attitude Toward Patients with Sickle Cell Disease? Sickle cell disease in adults: developing an appropriate care plan Perceptions of young adults with sickle cell disease concerning their disease experience Breathing Exercises for Inpatients with Sickle Cell Disease Online profile

Dr. Jonassaint is a practicing clinical health psychologist with an MHS in cardiovascular epidemiology. He has clinical expertise in chronic disease self-management and cognitive behavioral therapy, and has had extensive experience working with patients from under-represented minority groups. He has primarily focused on working with adolescents and adults living with sickle cell disease (SCD), a condition that disproportionately affects those of African descent and is associated with significant disparities in both funding and treatment. In Dr. Jonassaint’s research, their group has been working on understanding how mobile phones can be used to improve patient mental health and pain outcomes. He is the co-inventor of an SCD specific self-management app called SMART: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology. Testing of SMART has led to three publications and is now being used in four funded studies at three institutions.   Representative Publications: Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART) A systematic review of the association between depression and health care utilization in children and adults with sickle cell disease The association of smartphone-based activity space measures with cognitive functioning and pain in sickle cell disease   Video Links: SickleShare App Developed by Students Working With Dr. Jonassaint at UPMC SMART CBT App Concept Online profile